Crosscutting Lessons

a. States can benefit from technical assistance in implementing Cash and Counseling programs. Technical assistance with fiscal issues may be the most important.

The three Cash and Counseling states benefited from technical assistance provided by staff of the National Program Office and by consultants the office made available to them. This help covered a wide variety of topics. Initially, it covered issues relating to the design of the programs, such as the role of representatives, and then preparation for implementing an allowance program, such as securing organizations to provide counseling and fiscal services. After operations began, assistance focused on operating and refining an allowance program. Among the many issues on which assistance was provided were development of brochures and other print and video media for outreach and enrollment, improving interaction with traditional agencies, training of outreach and enrollment staff, implementing quality assurance programs for counseling, and making calculations to ensure budget neutrality.

The three states particularly valued technical assistance pertaining to fiscal agents, including development of payment methodologies, reporting standards, auditing procedures, and clarification of federal regulations. As the Cash and Counseling Demonstration began, federal regulations did not clearly specify which payroll tax forms the fiscal agent should be filing on behalf of consumers as employers of record. To resolve this issue, the ASPE project officer and a consultant for the National Program Office worked with the Internal Revenue Service. This resolution paves the way for future programs offering an allowance.

b. A Cash and Counseling program can successfully serve populations with various impairments and in various age groups. Other evidence shows that consumers in all three allowance programs were very well satisfied with the allowance program. Further, in Arkansas, satisfaction with care was much increased and unmet need much reduced for those assigned to the allowance program.

The experience of the three programs shows that Cash and Counseling can be successfully implemented with elderly adults, nonelderly adults with physical disabilities, and children and adults with developmental disabilities. With help from representatives, counselors, and fiscal agents, almost all consumers who were interested in receiving the allowance and able to hire workers learned to manage their own supportive services. Abuse of the allowance was almost nonexistent. While a very few cases of possible exploitation of the consumer were identified, these were resolved without incident, often before the consumer received the first allowance.

Nearly all consumers appear to have been well satisfied with the Cash and Counseling program. At this writing, more than three-quarters of those who received the allowance in Arkansas (the only state for which complete data are available on consumer satisfaction) said that it had improved the quality of their lives (Schore and Phillips 2002). The percentage was roughly the same or higher for early cohorts of consumers in Florida and New Jersey.18

Moreover, in Arkansas, disability-related health outcomes (such as the incidence of decubiti) for treatment group members were at least as good as those for control group members, and treatment group members were less likely to report unmet need and more likely to report satisfaction with their supportive services (Foster et al. 2003). (Similar analyses have not yet been completed for Florida and New Jersey.)

18

Foster et al., October 2002; and Memorandum Describing Responses for an Early Cohort of Florida Treatment Group Members, April 17, 2002.

Much analysis remains to be done to assess the effects of the Cash and Counseling program. For Florida and New Jersey, this includes analysis for the full samples of treatment and control group members on whether effects on consumer welfare are as favorable as those in Arkansas. The remaining analysis also includes assessment of effects on Medicaid and Medicare costs and on the welfare of paid workers and unpaid caregivers.19 The results of these analyses will help other states decide whether the Cash and Counseling program might work for them.

The states that have experienced Cash and Counseling firsthand have already decided that they want to make the program permanently available to all eligible Medicaid beneficiaries.

19

At this writing, reports on the experiences of paid workers and of informal caregivers in the Arkansas Cash and Counseling program are under review.

REFERENCES

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Benjamin, A.E., Ruth Matthias, and Todd M. Franke. “Comparing Consumer-Directed and Agency Models for Providing Supportive Service at Home.” Health Services Research, April 2000, vol. 35, no. 1, pp. 351-366.

Dale, Stacy, Randall Brown, Barbara Phillips, Jennifer Schore, and Barbara Carlson. “Improving Access to Medicaid Personal Assistance in Arkansas Through Consumer Direction.” Draft report. Princeton, NJ: Mathematica Policy Research, Inc., July 2002.

Doty, Pamela, Judith Kasper, and Simi Litvak. “Consumer-Directed Models of Personal Care: Lessons from Medicaid.” Milbank Quarterly, vol. 74, no. 3, 1996, pp. 337-409.

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Flanagan, Susan. “An Inventory of Consumer-Directed Support Service Programs: Overview of Key Program Characteristics.” Presentation at the Cash and Counseling annual meeting, Arlington, VA, 2001.

Foster, Leslie, Randall Brown, Barbara Carlson, Barbara Phillips, and Jennifer Schore. “Cash and Counseling: Consumers’ Early Experiences in New Jersey, Part II: Uses of Cash and Satisfaction at Nine Months.” Interim memo. Princeton, NJ: Mathematica Policy Research, Inc., October 2002.

Foster, Leslie, Randall Brown, Barbara Phillips, Jennifer Schore, and Barbara Lepidus Carlson. “Improving the Quality of Medicaid Personal Assistance Through Consumer Direction.” Health Affairs, Web publication. [www.healthaffairs.org/ WebExclusives/2203Foster.pdf], March 26, 2003.

Kitchener, Martin, and Charlene Harrington. “Medicaid 1915(c) Home and Community Based Waivers: Program Data: 1992-1999.” San Francisco: University of California, San Francisco, August 2001.

LeBlanc, Allen, Christine Tonner, and Charlene Harrington. “State Medicaid Programs Offering Personal Care Services.” Health Care Financing Review, vol. 22, no. 4, summer 2001, pp.155-173.

Mahoney, Kevin J., Kristen Simone, and Lori Simon-Rusinowitz. “Early Lessons from the Cash and Counseling Demonstration and Evaluation.” Generations, vol. 20, no. 3, fall 2000, pp. 41-46.

Mahoney, K.J., L.Simon-Rusinowitz, D.M. Loughlin, S.M. Desmond, and M.R. Squillace. “Determining Personal Care Consumers’ Preferences for a Consumer-Directed Cash and

Counseling Option: Survey Results from Arkansas, Florida, New Jersey, and New York Elders and Adults with Disabilities. Submitted to Health Services Research, 2003.

Memorandum Describing Responses for an Early Cohort of Florida Treatment Group Members. Princeton, New Jersey: Mathematica Policy Research, April 17, 2002.

Schore, Jennifer, and Barbara Phillips. “Putting Consumer Direction into Practice: Implementing the Arkansas IndependentChoices Program.” Draft report. Princeton, NJ: Mathematica Policy Research, Inc., December 2002.

Stone, Robyn. “Providing Long-Term Care Benefits in Cash: Moving to a Disability Model.” Health Affairs, vol. 20, no. 6, 2001, pp. 96-108.

Stone, Robyn. “Consumer Direction in Long-Term Care.” Generations, vol. 20, no. 3, fall 2000, pp. 5-9.

Velgouse, Linda, and Virginia Dize. “A Review of State Initiatives in Consumer-Directed Long- Term Care.” Generations, vol. 24, no. 3, fall 2000, pp. 28-33.